Bone Mets Thread
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((((MomATT))))) I have you and Dani in my heart- Always thinking and praying for you both--
Love, Carol
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MomATT, echoing that everyone else has said. You and Dani continue to be in my heart and in my prayers for the miracle turnaround she so desperately needs.
Annie, I'm so sorry about your friend. These losses are never easy, but all the more difficult when we are so vulnerable, both emotionally and physically, ourselves. Extra hugs to you as you process the loss of someone so close to you.
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Mom - Thinking of you and Dani. Can't believe you made the time to address each of us individually. You are in all of our hearts as you and Dani consider options.
Annie - I'm so sorry to hear about your friend.
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Does anyone here have experience with bone marrow activity? Mine lit up on my initial Pet Scan, but I was told it could either be cancer or just a typical thing since I was on chemo at the time. Also, I had had a very high WBC for a few years prior to Dx. It lit up again on my May 2016 bone scan and on the one I just had last friday. THe report says "Mildly increased tracer uptake in the calvarium is redemonstrated and might represent bone marrow activation associated with patient's chemotherapy as described before." My bone biopsy was a failure and I don't want to be passively waiting if this is something I should push on more aggresively. Otherwise the report is very positive: it says "Interval decreased uptake in the left acetabulum, might be secondary to response treatment" - I don't know what that means but I'm guessing healing possibly? And "no new foci of abnormal uptake to suggest other areas of new metastatic disease." I love that line. Having a brain MRI and CT scans to make sure other sites are still clear. Feeling positive for now.
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Mom, I'm so sorry to hear about all that you and Dani have been through the past few weeks and hard this treatment has been for her so far. I join with the others here in praying for you both and hoping that this treatment and the hands of her surgeon will bring her to a much better place. Huge hugs to you.
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Jen- Sounds all good to me!! Fingers crossed for MRI and CT scans.. My scans have said the same thing "most likely a response to therapy treatment" I love reading that too! I have had abnormal uptake in my skull from day one, without saying I had any skull lesions, but last scan it was increased uptake from previous months and it said probably from protocol not working. Entirely different from you. They still have not done an MRI of skull or CT of skull to confirm. For some reason they just don't worry about skull mets. If I complain at all, it is that I feel tender scalp and hot sensation in my skull area. MO claims it is from estrogen depletion. I beg to differ. Where my bones have gone from lytic to scerlotic, there is more uptake contributing to probably healing bones. I hope they are right.
Hugs, Carol
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Everyone, thanks for the warm wishes!
Jen and Carol, definitely an MRI is called for. It is not unreasonable. And Onco should consider skull mets. Not that much could be done different, but you do have a right to know and follow up.
Carol dear, thanks so much for your gentle prodding. I'll pm you.
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Momall I'm soooo sorry to hear of the latest news. Not what any of us wanted for you and Dani. Your strength in all of this has me in awe. Please remember to take care of you to- I know it's easier said than done! Sending you all hugs and praying for Dani and your entire family!
You are always in my thoughts!!!!!
Babs
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momall. Darn. Not the best news. So sorry. Will be praying for your family. I echo what many others have said :. Your Ds is very lucky to have you as a mom and grandma to her children.
Annie. Sorry for your loss. Damn disease
Wendy. Sorry about your horses. Hate wat this disease does to our lives
Hugs
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Momallthetime,
With everything you are dealing with I can't believe you found time to address so many of us individually. You are such a devoted mom (perhaps that is redundent) giving your all to protect and advocate for your daughter it just brings me to tears. I gave you a hat tip in the Ibrance thread for that selfless dedication. It is awe inspiring. I'm so sorry this is happening to Dani. It is beyond unfair! You and Dani are in my thoughts every day. Sending you love and support.
Cath
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Annie-so sorry for your loss-it's so hard when we lose someone to this wretched disease!
Wendy-I'm sorry you had to sell your horses. Things like that makes us realize how BC keeps changing our lives-and many of these changes are not what we want at all!.
Hugs to all,
Babs
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Annie- so sorry about the loss of your friend!
Momall- Hugs to you and Dani...praying for a miracle for your family.
Thinking of you all! So thankful for the good news you share and standing with you during bad news days!
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Annie, I'm so sorry you've lost someone you love to this darn disease. It's just too cruel. Take your time in grieving and I hope the memories you do have will become a source of joy.
Wendy, I'm glad your horses are with someone good. So, so hard to let go.
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Momall, I'm so sorry to hear the news of Dani's progression. I'm hoping and praying for better news for your entire family soon. Big hugs to you and Dani.
Lynnwood, I did look at my bottle of Femera, and yep, right there it says do not drive or operate machinery, may cause dizziness.
Kaption, I will make sure I tell my onc tomorrow about the vertigo and see what he says. I'm hoping he's not worried about it, I have dealt with it for so long.
Annie, I'm so very sorry for your loss of your friend. Big hugs to you.
My appointment with the onc is tomorrow...gotta tell you I'm kind of dreading it, I've got to go tell him why I havne't started the Xgeva shot yet! As far as I know, he doesn't know that I've had this dental work done. My last root canal is the next day, so then another six weeks until I can start the shots. I hope and pray he's NOT upset with me, but I knew the work had to be done, I've been putting it off for years. Say a little prayer that he's not too terribly upset with me.
I've been MIA for a week or more, have just been trying to get some things accomplished around here. The rib pain is still better, the only time I know it's there now is when I sleep on that side. Hoping and praying the Femera is having some effect on the mets. I finally had the gumption to read my reports completely. I do have one skull met. Should I be more concerned about that than the others, or is it just considered one more? Got great news on my birthday last week, my 13 year old granddaugher has Juvenile Rhuematoid Arthritis. She was diagnosed at 18 months old. She's taken Enbrel shots her entire life. Last week my daughter took her to Salt Lake City to the University, to see a specialist in JRA. Her bones show NO deformation, which is almost a miracle in itself since she's dealt with this her whole life, and her JRA is in complete remission!!! Yahoo!!!! This is such an answer to prayer. She's just a lovely girl, inside and out, and has been so limited in what she can do, in school sports and dancing, etc., so this comes as great news. It was the best birthday present I could have asked for. I have one grandson who is 10, who has type 1 Diabetes, so now, if we could get him healed by some miracle, I would be the happiest grandma on earth
Thanks to you ladies, you give me strength, and are really helping me cope with all of this. You are such a blessing to me.
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Gracie. Great news about your granddaughter. Now praying for similar results for your grandson!!!!
HappyHappy Bithday to you🎈🎈🎈🎈🎈
Babs
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Gracie, I can't imagine your onc would be upset with you for wanting to avoid ONJ. He should be happy you're informed and proactive. And Happy Birthday! That's wonderful news about your granddaughter's JRA being in remission! I will hope and pray for a similar miracle for your grandson.
And beautiful photo, Kathryn. There's nothing like a glorious sunset (or sunrise) to reassure us of a higher power at work.
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Gracie - I had to have a lot of dental work done prior to starting Zometa. My oncologist encouraged me to get it all done and assured me the delay in starting Zometa was not an issue. I can't imagine your oncologist would feel differently. It is very important to get it taken care of now. Happy belated birthday!
Cathy
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I wanted to share another fabulous blog post that so hits the nail on the head for me, although the writer is dealing with an entirely different health challenge.
https://themighty.com/2016/08/response-to-people-w...
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I wanted to share a new trial with you that I learned of from another group I am in. It was presented at last years San Antonio Breast Symposium and the results are pretty outstanding. Dr. Casey Williams (pharmD, with a whole team in South Dakota and San Diego) is using the technology of genomic and proteomic profiles to create of combination therapy to specifically target YOUR tumor type. Think the combination therapy (multiple points of targeting) that was/is used to turn HIV/AIDS around, but in a way that is targeted directly to YOU. Not just throwing any chemo or drug at it with any real rationale.
Their current work and clinical trial can be seen here: "Genomic and Proteomic Profiling Targets Influenced Treatment in Metastatic Breast Cancer", with the possibility of expanding the trial, and becoming involved from afar.
It's small so far but the overall response rate for MBC with 4 previous lines of treatment is 45% vs. 10% reported in current literature. I have an email for Casey Williams if anyone wants it please PM me. I don't know anything other than what I included here.
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Thanks for the birthday wishes! You were right, my onc was very much in favor of me finishing up dental work first and was great about it! I just hadn't ever done something like make a decision like that without consulting him first. So it turned out ok!
And great news! My tumor markers are leveling out after only a month on the femera.. Not going down but not up either! So he was pleased with that and I'm over the moon about it. Was very worried the cancer wouldn't react but it did! Yea! Small victories
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Gracie- every victory counts!!!! Hooray!!!
Bab
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Has anyone seen a rheumatologist concurrently while on AI's? I also have degenerative arthritis in my lumbar area, and it's affecting movement and my ability to do chores. MO doesn't want me to do phys therapy. I can understand w/all my compression fractures, but I've GOT to do something.
Thanks, Lita
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Lita, funny you brought this up! My onc asked me if I wanted to see a rheumatologist when I complained about the aches and pains from AIs. I have degenerative arthritis also in my spine and feet. I have been putting it off so far but may go for a consult.
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Hello to everyone,
I want to thank everyone of you for your condolences, it means so much to me. It's going to take me a long time to heal from this. She wasn't just my very good friend but also my neighbour. It's hard for me to walk past her house right now knowing she isn't there. I know in time it will get easier but right now my heart is aching.
Gracie, great news about your granddaughter and praying for the same great news for your grandson. I'm so happy your tumor markers have levelled out!
Deanna, I can totally relate with that blog! I had someone say very nastily to a friend of mine that they didn't believe there was anything wrong with me because he always sees me out and about. I guess I'm suppose to curl up in a corner and give up.
Wendy, I'm so sorry you had to sell your horses. I can totally feel your heartache. It's not fair how many ways this disease hurts us.
Hugs to all, Annie
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Gracie- Happy Birthday !!!
Annie- So sorry about your friend.. I know how you feel- I had lost my BFF to ovarian cancer in 2009- . She was so brave and if I could just have a 1/4 of her strength. I sometimes can see her shaking her head at me.. and telling me to get a grip. She was an angel on earth. Hugs to you-
Carol
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Hi ladies, I've been lurking and many pages behind but hope you all are enjoying the last bits of summer and no new progression for everyone.
My mom (her info is in my signature) has been going to Dana Farber on a trial and after two months, 25% reduction in liver and bone Mets are all stable. This is great news after almost 9 months of progression followed by her blowing through all treatment options. Hoping she can stay on this trial and it continues to work for her!
As for me, found out my genetics results today and I am positive for BRCA2. Haven't told my mom yet but I'm meeting with a counselor Thursday for next steps. Bummed out tonight for sure.
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Hi DaughterLove15 - Oof. Take some time to be bummed. There's certainly strategies and hope and certain things you can do but one could do without that particular genetic profile. Especially watching your mom deal with this ...
But it so nice to hear your Mom caught a break. What trial at Dana Farber is your Mom on? I am thinking of a different Mom, the one who is looking for options for Dani ...
MomAllTheTime - I am without words. Things are moving so fast for Dani. I hesitate to suggest you pack up and go to Dana Farber. I would not want to go myself in her shoes. The trials are Hail Mary's, who knows if they will work. If she goes, she just loses precious family time. A lot of time with constant travel back and forth. However, she is so young and this is so unfair.
Are her current local doctors talking about trials? Do they have an affiliation with DF? My local oncologist does have people enrolled in trials that are actually hosted at a major institution several hours a way.
>Z<
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Carol, so sorry about the loss of your friend. I'm sure she's watching over you and amazed at your strength and courage. Please don't ever doubt that, you are an amazing spirit.
DaughterLove, so happy your mom's treatment has been working for her and prayers for it to work for a very very long time. Sorry to hear about your genetics results being BRCA2 positive but knowing you're meeting with a counselor and planning your next steps must make you feel like you're taking some control in this. I don't know what to say but I'm sending you healing hugs.
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thank you for your kind words Z and AnnieO. She's been doing Sapacitabine (oral chemo drug) for 7 days then seliciclib (cdk inhibitor) 3 days followed by a week off In Boston. I'm not sure what the qualifications were to participate but I know they were accepting BRCA patients.
As for me, I always just assumed I'd get the double mastectomy and as soon as possible. I'm 29, my mom's sister was diagnosed at 34 and gone by 40. Her daughter, my cousin, is a few years older than me and also positive. Our grandfather had pancreatic and lots of ovarian and breast due to the gene on his side. Bad genes for sure.
Momallthetime, there are lots of trials, could Dani qualify? I know my parents hate the weekly drive into the city as it causes them so much stress. I certainly hope things look up for you girls and very soon.
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Hello Everybody,
I've been away from the forum for several days...trying to live my normal life, working, mom of 7 year old, etc., but will be forced to live my "new normal" on Monday as have my first follow-up PET scan since diagnosis. I will get results from my oncologist at next appointment (Thursday following scan).
My question is this, my original tumor is noticeably smaller since I started on Letrozole. My oncologist confirms this so in my mind, that means the medicine is working, but is it possible (or probable) that the original tumor can shrink but the bone mets spread or worsen? Or there may be spreading to organs? I had no organ involvement in the original scan.
I have had no bone pain to speak of so far so I have nothing to gauge if the medicine is working on the bone mets...seems like if it's working on the primary, it should be working on the bones as well. Bone biopsy confirmed same hormone receptor status for breast and bone mets.
Any input greatly appreciated!
Thanks!
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